Generic Name: CellCept (mycophenolate-mofetil)
CellCept Reviews
"I've had SLE lupus with nephritis for over 10 years. CellCept is a miracle drug for me. It is the only drug that stops protein loss in my kidneys, it stops my hair loss and aching bones. My skin issues are severe, and CellCept with Plaquenil truly has cleared the constant issues. I used to have rashes and hives nonstop. Four months on this drug, and it cleared up. The side effects are present though: insomnia, extreme fatigue (I can sleep 10 hours if not setting an alarm), digestive problems (I went plant-based to stop the IBS from this drug, and it is now manageable). You will be immunosuppressed - I had an infection that left me in the ICU. You have to take care of your body when you are on this drug. Wash your hands, eat healthy, do not be around sick people. Everyone in your life needs to get the flu shot. Any deep cleaning at the dentist or oral surgery means you have to be on antibiotics because your body is just slow to heal itself on CellCept. The side effects are worth it though."
For Nephrotic Syndrome "I have scleroderma. I have been very fortunate, I have had no side effects. CellCept saved my life. My lungs were being destroyed rapidly by my scleroderma. After I started on CellCept, my lungs have not gotten any worse in over 5 years."
"I have been taking 3000 mg a day of CellCept for at least 10 years, and the older I get, the more side effects affect me, or maybe the progression has finally outlasted the effectiveness of the medication. But it's all good; and I'm still alive!! CellCept has given me a better quality of life and is worth the risks."
For Lupus "I was diagnosed with Systemic Lupus Erythematosus in November of 2006. I've been taking CellCept 2000mg a day since then. It has helped me tremendously! I hadn't experienced any real side effects until recently. I started having anxiety attacks after being put on the generic version of CellCept."
For Rheumatoid Arthritis "I have been taking this for about 6 months now and it has greatly reduced the inflammation and pain caused by inflammation of the arthritis. The only complaint I have is that if I take it in the morning as the doctor wants me to (1000mg 2x/day), I am drowsy the whole day."
For Myasthenia Gravis "I was diagnosed with Myasthenia Gravis. It had affected my left eye. I lost control of the eyeball movement, and the eyelid had to be manually opened. I have been taking 2 grams of CellCept daily for six months. I had an immediate positive response to the medication, and the eye function improved 90% within a month. In the following months, eye improvement was slow with small incremental improvements. Now the eyelid is working as expected. The left eyeball is not following the right eye. There are no side effects."
For Nephrotic Syndrome "I was reluctant to take this medication but essentially had no choice when faced with the possibility of losing my kidneys. It saved my kidneys and also helped greatly with my other SLE symptoms (joint pain, neuropathy, and lung issues to name a few). I also can't tolerate steroids, so luckily CellCept combined with Plaquenil has kept things under control without having to add Prednisone in the mix. I did experience some issues with dizziness, hair loss, and insomnia, but they have tapered off after being on it for a year now; still have problems sleeping at times though and am now experiencing some anxiety. I'm also concerned about the long-term effects ie. lymphoma risks and it's very expensive, but overall it saved my life."
For Autoimmune Hepatitis "I was diagnosed with acute hepatitis on January 1, 2006, and was told I needed a liver transplant as soon as possible. I started Imuran shortly thereafter - no response - MELD climbed to 35. I went on CellCept and liver enzymes, etc. returned to normal range. Now on Prednisone and CellCept after a minor enzyme spike - enzymes are now normal. I still have my own liver."
For Myasthenia Gravis "I have suffered from MG for 9 years. My original symptoms were mostly ocular with some generalized symptoms. I tested negative for AcR antibodies. I was on a high dose of Prednisone for a long time. When the symptoms came back, I told my neurologist that we had to find something else, and he recommended we try CellCept. It works, but there are side effects (mostly just annoying) and long-term risks."
For Myasthenia Gravis "Cellcept works for many with Myasthenia Gravis, but not all. Thank God it has worked for me. I would be taking huge amounts of steroids or some other even more potent immunosuppressants if it was not for Cellcept. Thank you Roche."
For Lupus "Taking 2000 mg a day with mild side effects. Tremors in my hands when I first started and when the dose was increased. Those have since stopped. I also experience some sleep problems, but this could also be due to another medication. My body responded very well to the medication, and my condition has significantly improved in just a few months. Hoping for continued success on the medication."
For Lupus "I was diagnosed with lupus on April 20, 2009. I was prescribed CellCept and am still on it. I notice a difference in the joint pain if I haven't taken my dose yet. The disadvantage is the stomach issues it causes. My doctor also prescribed me Imodium. That helps a lot."
For Myasthenia Gravis "I have been on CellCept for almost 3 years. I started taking it with an IVIG treatment and was taken off the IV to see if I can get by with just the CellCept. My oncologist wants me off it because of the increased risk of lymphoma. I will start trying to get off it in April."
For Organ Transplant, Rejection Prophylaxis "I have had 3 Kidney Transplants and I've been on Cellcept 2 different times. The last time I was on Cellcept, for 7 years it worked well until I developed Cellcept Colitis. I was extremely sick and found myself in the hospital. The doctors discontinued Cellcept and now I am on Imuran."
For Uveitis "While this medicine is keeping me from going blind, it upsets me every time I read the information about it (not suitable during pregnancy). I want to get pregnant but it is impossible for me to be taken off this medication without going blind. It looks like I'll never be able to have a child."
"I have autoimmune hemolytic anemia. I am refractory on steroids and rituximab (it worked first time, but not anymore on second onset) Now I am on 2g of cellcept per day. For now I do not have any major side effects. Just sometimes problems with digestion. I am hoping that it will stay that way, because next line of treatment will be much worse"
For Organ Transplant, Rejection Prophylaxis "Cellcept is easier on your kidneys than Prograf so that is a plus. It can increase your risk of cancer which is scary. But if I had the choice I would be on Cellcept instead of Prednisone. It does cause depression and anxiety for some people and I am one of them. But almost all of the transplant drugs do. Prednisone seems to be the worst of the bunch though. Weight gain, blood pressure goes up some on this, insomnia, tiredness is a big one. But you have to take something. I don't know about all of the alternatives to this drug, but if it doesn't work then ask. I will say my biggest problem with the drug has been that I developed the BK virus which is dangerous and I had to come off of Cellcept to allow body to fight the virus. So that is something to watch. Take your pills - it is better than rejection or damage. But always ask for alternatives. Pricey so go with generic!"
For Organ Transplant, Rejection Prophylaxis "I had a liver transplant Feb '06 and have taken 1000mg twice a day now for a couple years. Before that dosage changed a bit to get correct dosage. I also take tacrolimus (prograf 1mg twice a day) I have had no side effects--expensive but luckily I have a plan."
For Organ Transplant, Rejection Prophylaxis "CellCept gave me just severe diarrhea that I ended up back in the hospital with severe dehydration and anemia. Was switched to Envarsus XR with Zortress and prednisone. Envarsus was switched to Prograf. A biopsy showed Thrombotic microangiopathies (TMA) (very small blood clots), which can be caused by tacrolimus, so I was switched to Cyclosporine. Everolimus caused my cholesterol to go very high so was switched to Imuran. Imuran messed up my blood with an extremely low platelet count. So now I am just on cyclosporine and prednisone, with fingers crossed and prayer."
For Organ Transplant, Rejection Prophylaxis "I had a liver transplant in 2001 and was put on both CellCept and Prograf. When my creatine reached 2.1 I was taken off Prograf and put on 2000 mg a day of CellCept. I have had no side effects. I only problem is the cost, I am now on Medicare and will be in the donut hole after 4 months."
"I was diagnose MG for three years, having plasma weekly but still not response. Currently taking cellcept, it seems response well within two days. Hopefully it help my symtoms so I don't have to have plasma weekly"
For Organ Transplant, Rejection Prophylaxis "I had a liver transplantation in 1997, and been on Sadimmun Neoral for 13 years. In 2009 my Doctor decided to switch to Cellcept because my creatinine level rose from 1,3 to 1,7 (Kidney). I have been on both Neoral and Cellcept over the whole Summer of 2009. I did not feel well and finally in Nov. 2009 I had a Hyper Blood-sugar shock of 1402, Was hospitalized, now I am slowly recovering with Insulin BS 100-200. Ii switched back to Sandimmun 25-0-50 but my Doctor wants to switch again to Cellcept. I'm afraid to get a Hyperglycemia again."
For Organ Transplant, Rejection Prophylaxis "I am having severe diarrhea on Cellcept which has my electrolytes out of whack to the point of having to go to the local ED for fluids and supplements. I'm taking 2g daily in 4 doses. The more I drink, the worse it gets so I am in a catch-22 situation. I am also on Envarsus and prednisone as anti-rejection meds. I'm also taking Septra which may be contributing to my problem."
"Diagnosed with ocular myasthenia gravis (OMG) 18 months ago - specifically double vision. Prescribed Mestinon (pyridostigmine) at outset along with corticosteroid (prednisone). Vision stabilized over time to varying degrees. Concerns raised over long-term use of steroids. Accordingly, 4 months ago, prescribed mycophenolate (CellCept) 1000 mg twice a day. No change initially, however, after 4 months, some noticeable improvement in reduced/stabilized double vision (diplopia). Some side effects I had was indigestion, blood pressure fluctuation, sweating, abdominal pains (sharp, but fleeting), and cramps in the extremities, but also in the stomach area."
For Myasthenia Gravis "Taking CellCept for my Myasthenia Gravis has allowed me to live a symptom-free, normal life."
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